Health care as a human right: considering the Medicare for All plan

  

With as many as 15 million people estimated to lose their medical coverage because of Trump administration policies, America has once again entered a health crossroads.

 

As a Huntington’s disease gene carrier who for many years hid that fact from the very system that was supposed to help me – “an absolutely absurd situation” – I rejoiced when President Barack Obama’s Affordable Care Act (ACA) guaranteed coverage for those of us with pre-existing conditions.

 

Like many Americans, my family and I have struggled with many other aspects of this supposed “system.”

 

As a three-decade observer of the HD cause, I have chronicled the fight to end genetic discrimination, improve care for the affected, and discover badly needed disease-modifying therapies.

 

As an HD advocate, I embrace health care as a human right.

We need more

 

This view echoes the American tradition of President Franklin Delano Roosevelt’s "Four Freedoms." Roosevelt, however, lost the opportunity to introduce a public health system along with the Social Security Act of 1935, to avoid stirring up opposition among doctors, as recalled by Yale University political scientist Jacob Hacker, Ph.D., in his contribution to the book The Trillion Dollar Revolution: How the Affordable Care act Transformed Politics, Law, and Health Care in America.

 

Other inspiration for health care as a human right has come from the United Nations’ Universal Declaration of Human Rights (partly inspired by former first lady Eleanor Roosevelt), President Lyndon B. Johnson’s Medicare and Medicaid Act, Senator Edward M. Kennedy’s legislative push for universal health care, and President Bill Clinton’s attempt to establish universal coverage.

 

The federal Medicare (for seniors) and Medicaid (for low-income people) programs represent actual, partial advances, and the ACA (aka Obamacare) is “arguably the most important health care legislation in U.S. history,” according to The Trillion Dollar Revolution editors Ezekiel Emanuel, M.D., Ph.D., and Abbe Gluck.

 

However, as that book and others point out, we need so much more – for the HD community and for all of society. I support Senator Bernie Sanders’ Medicare for All Act of 2025, co-sponsored by Reps. Pramila Jayapal and Debbie Dingell, as a necessary step to solve the country’s ongoing health care crises. Sanders first introduced this bill in 2013.

 

 

Gene Veritas, aka Kenneth P. Serbin, in a Medicare for All t-shirt (photo by Regina Serbin)

 

All items covered – and no co-pays

 

Health is first. Without it we can do nothing. The COVID-19 pandemic, and now the political dispute over health care subsidies, provide powerful examples of how people can be left without healthcare at critical moments. During the pandemic, millions of people lost their jobs and thus also their insurance coverage.

 

According to the congressional bill, Medicare for All would involve a national health insurance system administered by the Department of Health and Human Services (HHS). It would cover items and services to diagnose, treat, or rehabilitate a health condition, including hospitalization and prescription drugs, mental health, dental and vision services, long-term care, and reproductive care.

 

Medicare for All would have no co-payments. Private health insurers and employers could only offer supplemental, but not duplicative, benefits. Health insurance exchanges would disappear. The bill provides for implementation of health care provider participation, HHS administration, and payments and costs.

 

All U.S. residents would be included from birth. Those who are 18 or younger or 55 or older, or already enrolled in traditional Medicare, would enroll in the program starting a year after enactment of the bill. Others could also enter the program at that time.

 

The system works for investors, not patients

 

In 2023 Sanders, who lost his bid for the 2016 Democratic Party presidential nomination, published It’s OK to be Angry about Capitalism. In Chapter 5, titled “Ending Greed in the Health Care System,” he analyzes the many drawbacks of U.S. health care and outlines his plan for Medicare for All.

 

Here I feature the highlights of the plan. Sanders’ critique rings true with my and many other families’ frustrations with the health care system and how people think it could improve.

 

Health care in America is a profoundly left-versus-right political question. Ultimately, however, it must transcend politics. We all share the same biology – including the huntingtin gene, which, when it has expanded in people like me, leads to Huntington’s disease. A treatment will work independent of a person’s political outlook.

 

For Sanders, the basic problem is that the U.S. system “works for investors, not patients.” In 2021, during the pandemic, the health care “industry” made over $100 billion in profits, with stock prices soaring and CEOs receiving extremely generous compensation packages. It has been a “true American success story.”

 

However, for ordinary Americans it is a “broken system that must be completely transformed.”

 

America’s great political challenge is to decide whether to continue to focus on profits, or do we create a system where “every man, woman, and child in this country should, in a cost-effective way, be guaranteed quality and equitable health care regardless of their economic status.”

 

A ‘national embarrassment’

 

In the U.S. we suffer from the “national embarrassment of remaining the only major country on earth not to provide health care to all,” Sanders points out.

 

He cites compelling statistics. The U.S. spends $12,530 annually for each individual on health care, a total of $4 trillion, or 20 percent of GDP. The UK spends just $5,268, Canada $5,370, France $5,564, and Germany $6,731. Each guarantees health care to all.

 

Sadly, in terms of health care the U.S. ranks close to the bottom of the major industrialized nations in longevity, accessibility, coverage, equity, and efficiency. “We are getting a terrible return on our huge expenditure on health care,” Sanders observes

 

“The essential problem of our ‘system’ is that it is not really a system,” Sanders asserts. “It is a disjointed, complicated, non-transparent collection of thousands of entities dominated by powerful sources who have made health care a commodity, and who seek to gain huge profits from it.”

 

Sanders underscores that the goal of the “‘system’ is not to cure disease or keep people healthy” but to “make as much money as possible” for the insurance companies. Those companies “have nothing to do with the actual provision of health care.”

 

The six largest insurance companies made over $60 billion in profits in 2021, while the CEOs of just eight prescription drug companies made $350 million in total compensation.

 

 

Senator Bernie Sanders (from the Sanders website)

 

60,000 deaths due to lack of care

 

According to Sanders, more than 60,000 Americans die annually because of lack of health care.

 

The U.S. lacks sufficient number of doctors, nurses, and other health care personnel, and the country has “medical deserts.” Whereas other countries pay for medical and dental studies, in the U.S. students become “overburdened with debt.”

 

“Emergency rooms are providing primary care and non-emergency treatment because people are unable to find a primary care doctor of their own,” Sanders points out.

 

The “enormous amount of time and energy” spent on navigating the “unbelievably complicated insurance system drives many […] into despair” and leaves “health care professionals also demoralized.”

 

Under Medicare for All, “no more arguing with insurance agents” and “complete freedom of choice as to the doctor and hospital you want,” Sanders emphasizes.

 

The current Medicare program needs to expand to include dental care, glasses, and hearing aids, he argues.

 

Half of the country’s 500,000 annual bankruptcies “are connected to unpaid medical bills,” he writes.

 

Other countries’ health successes

 

In the United States, health insurance is typically tied to employment, unlike in other advanced countries that offer universal health coverage. “There are literally hundreds of different plans – each with different degrees of coverage and cost,” he writes.

 

“Americans should not be chained to a job because of health insurance,” he states. “Everyone, regardless of income, should have access to the medical treatment they need, as a human right.”

 

Politicians focus on the cost of health care, but not the biggest cost of all: Americans do not live as long as people in other advanced countries.

 

In Canada, which has a public health system and negotiations with the pharmaceutical industry, drugs cost 90 percent less.

 

Norway’s public health system has made for a greater sense of freedom, happiness, belonging, Sanders explains.

 

In the U.S. the “corporate media blackout with regard to international health care systems” and lies by politicians leave Americans ignorant about their comparative lack of well-being, Sanders notes.

 

A ‘vigorous debate’ on funding needed

 

On his Senate website Sanders has published a six-page document about funding Medicare for All (click here to read more). The plan would generate trillions of dollars.

 

“As the wealthiest country in the world, we have a variety of options available to support a Medicare for All single-payer health care system that guarantees high quality, affordable health care as a right, not a privilege, to every man, woman, and child in this country,” Sanders writes. “In my view, there needs to be vigorous debate as to the best way to finance our Medicare for All legislation.”

 

According to the document, eliminating the administrative costs of private health insurance, which are six time more than the cost of running Medicare, could save $500 billion per year. Negotiating prices with drug companies could save another $113 billion.

 

Employers would pay a 7.5 percent payroll tax instead of paying for employees’ insurance – a savings of $9,000 per year per worker.

 

Instead of paying $5,277 in premiums to private insurance companies, families would pay just $844 a year for Medicare for All.

 

The document proposes ending tax breaks that would become obsolete under Medicare for All. It also advocates for higher taxes on the wealthy, limiting tax deductions, closing loopholes, making the estate tax more progressive, establishing a wealth tax on the top 0.1 percent, and other measures.

 

Wall Street and large, profitable corporations would also pay greater taxes, and a one-time tax on the trillions in offshore profits would be levied. Corporate accounting gimmicks would also be disallowed.

 

Overwhelming support for Sanders’ plan

 

Given the debates over Obamacare and previous initiatives, the political challenge of transitioning to Medicare for All would likely be enormous. The debate would also need to include an informed discussion of the positives and negatives of universal care systems in other countries.

 

Sanders notes “overwhelming support” for Medicare for All in polls.

 

In the words of political scientist Hacker, “the newly intense push for Medicare for All has transformed the character of Washington’s perennial health care debate.”  

 

Dr. Hacker documents the rise in support for Medicare for All both among Democrats and Republicans. Recognizing the political hurdles to this program, he advocates beginning with a “Medicare for More” strategy – expanding the current Medicare program to people younger than 65. This approach could serve as a potential step on the way to a long-term goal of delivering “quality health care to all Americans at a cost our nation can afford.”

 

In Congress, support for the measure has grown significantly. With no co-sponsors in 2013, the bill now has 111 in the House of Representatives and 17 in the Senate.

 

Sanders points out more that than a dozen medical associations support Medicare for All, including National Nurses United, with its 225,000 members the largest nurses’ union in the U.S.

 

The U.S. health care system “is deeply inefficient and unsustainable because it prioritizes short-term financial returns rather than long-term investments in our health,” union president Bonnie Castillo told a hearing of the Senate Budget Committee in 2022. “This leads to a system that is unaffordable for our country and for our patients.”

 

The current system has hundreds of billions in administrative costs, Sanders notes. Medicare for All would eliminate most of these costs, aiding “the business community and our overall economy by ending the costly and uneven system of employer-based health care.” Big companies would also benefit by no longer being at a disadvantage with countries that have universal health coverage.

 

“Scientists will be freed to concentrate on developing breakthrough drugs, rather than tailoring their research so that pharmaceutical firms can maintain record profits,” Sanders adds.

 

In the HD community and beyond, as we ponder the traumas experienced by an inadequate health care system, let us join hands to advocate for Medicare for All.

Strangling of patient in nursing home a shuddering reminder of subpar care for Huntington’s disease

The strangling and serious injury of a 49-year-old, late-stage Huntington’s disease patient at an Oregon nursing home has shocked the HD community and provided a shuddering reminder of the subpar care, fueled by ignorance and approaching neglect, that some affected by the disease face.

Anne Haskins was allegedly strangled by another patient who used  a call cord ripped from the wall after Haskins, wheelchair-bound and cognitively disabled, wandered into the other woman’s room shortly before 9 p.m. PDT on May 28, said Rebecca Ambrose, 29, Anne’s daughter.

There’s no evidence Anne deliberately provoked the other patient, whom police described as suffering from “severe dementia,” but her HD chorea – the involuntary movements typical in HD – means she can inadvertently hit people with her arms.

Anne was taken to Bay Area Hospital, located in Coos Bay, OR. After the attack, her heart rate dropped to the dangerously low rate of around 30 beats per minute, said Rebecca in a phone interview on May 30.

Anne is currently in the hospital’s cardiac unit. Doctors offered the option of a pacemaker, but the family decided against one because they believe it would simply help to prolong suffering, Rebecca said.

“She may have lost too much oxygen to the brain to recover from this,” she added.

The incident took place at Avamere Rehabilitation of Coos Bay, a private facility where Anne has resided since August of 2009.

Anne Haskins, grandson Andrew, and dog Scarlet, about ten years ago, before HD left her unable to speak and care for herself (family photo)

‘Where was the staff?’

According to the Coos Bay police, the alleged perpetrator is under observation in the psychiatric ward at Bay Area Hospital. Avamere has prohibited the alleged perpetrator from returning to its facility, Rebecca added.

“Where was the staff???” Rebecca exclaimed in several private Facebook HD discussion groups. Rebecca agreed to allow inclusion of her Facebook comments in this article.

On the night of the attack, the certified nurses assistants (CNAs), the main caregivers at the facility, should have put Anne to bed by 7:30. However, she was still moving around in her wheelchair around 9. No CNA noticed that she entered the other woman’s room. A CNA came upon the injured Anne sometime later, said Rebecca.

The police received a call for help at 8:49 p.m. According to Officer Randy Sparks, the lead detective on the case, a nurse, responding to the call alarm from the room, intervened to assist Anne.

“It just makes me angry,” Rebecca said. “I felt that it could have been foreseen. It makes me angry to think that my mom could be killed, and neither the person who did it nor the nursing home could be liable for it.

“How could one bedridden patient strangle another bedridden patient and no CNA have a clue? There were five CNAs on the floor, according to the director of the home.”

According to Deborah Nedelcove, Avamere’s vice president of risk management and its chief compliance and privacy officer, 42 residents currently occupy the 90-bed Coos Bay facility.

Above, the strangulation mark on Anne's neck. Below, daughter Liz with Anne in Bay Area Hospital (family photos)

Detective Sparks has concluded his investigation and forwarded his report to the district attorney’s office. However, those authorities have already have informed Rebecca that criminal charges will not likely be filed because of the mental state of the alleged perpetrator, Rebecca explained.

The alleged perpetrator is not currently under arrest.

“The police can investigate if there is a criminal action by a patient,” she added. “They cannot investigate neglect by nursing home staff.”

Avamere’s response

Debbie Lane, the Avamere director of nursing, refused comment on the case, as did Britta Milius, the nurse in charge when I called the facility the evening of May 30.

VP Nedelcove, who works at the Wilsonville, OR, corporate headquarters of the 50-facility private company primarily doing business in Oregon and Washington, declined to comment on specifics of the case but offered some observations about the facility and Avamere’s policies, procedures, and philosophy.

“I have never heard of an incident like this,” Nedelcove, who has some thirty years’ experience in health care, said of the strangulation and Rebecca’s allegation of inadequate monitoring of patients. “This is an isolated incident. It was not expected. You can’t account for people who decide at a moment’s notice to do something.”

Nedelcove insisted that Avamere CNAs “definitely keep an eye on all of our residents all the time…. There are many residents in our facilities, and many of them have behavior issues.”

Avamere is conducting an internal investigation of the incident and, based on its conclusions, may alter procedures at the facility, Nedelcove added.

Seeking assistance

However, Rebecca has already contacted state oversight agencies and local media outlets.

She has also obtained assistance from the Northwest Chapter of the Huntington’s Disease Society of America (HDSA). However, HDSA cannot assist with placing Anne in a different facility because Anne, before symptoms worsened, had refused to give power of attorney to any of her relatives, preventing the sharing of medical information with an outside agency, Rebecca explained.

Rebecca posted pictures of her mother’s injury on the Avamere Facebook page, but the company removed them and then blocked her from posting additional images. She also placed a sign on the front door of the facility denouncing the strangling but doesn’t know if it remains.

Rebecca and other family members fought a hospital’s staffer's recommendation that Anne return to Avamere and will place her in a different facility, Myrtle Point Care Center.

Rebecca is also consulting private attorneys about potential legal action.

Denouncing neglect

“I’m really disgusted with this,” said Rebecca, a family advocate for a non-profit who tested negative for HD in 2006 and has identified some 50 descendants of an HD-stricken great grandmother who are at risk of inheriting the mutation. “I’ve told them I’m not going to be quiet about this.

Rebecca Ambrose (personal photo)

“I feel like I already have to be robbed of my mother. I feel a lot of times like I have to be the mother to my siblings and my child, and I have to take on a lot of what a grandparent would do, because my mom isn’t able to.

“I can still visit my mother. That’s being taken from me slowly. I didn’t expect my mom to be in a nursing home and have an incident that could cause her death. I always thought her disease process would cause her death. I understand that there are going to be falls out of the shower or the bed. But there’s no excuse for somebody to strangle my mother and for her not to be protected in facility that gets $80,000 a year to care for her.

“I’m livid and I’m horrified. My mom used to watch that movie One Flew Over the Cuckoo’s Nest. I hate that movie. It’s one of the saddest movies I’ve watched in my life. That’s the state of nursing homes in America today.

“I just want to talk to whoever is going to listen to me. This can’t happen to people –when you entrust someone’s life! My mom is in a facility for her own protection, not to be neglected. I can assure you that nobody in my home would strangle my mother. I wish there were options that were not for profit. These people do it for profit.”

Care providers: a mixed bag

According to Rebecca, in early 2012 a man visiting Avamere to see his wife became angry at Anne and tried to punch her because an employee had accidentally taken his chair to Anne’s room.

Anne also suffers from bed sores, and she sometimes does not get her spoon-fed evening meal until late at night, Rebecca said. The CNAs bathe Anne, left incontinent by HD, just once a week, which understandably leaves a patient uncomfortable.

“It’s really a mixed bag with the care providers,” Rebecca said, referring to the CNAs, the main caregivers but also the lowest rung in the nursing home hierarchy. “Some love and care for her and take the time to feed her and meet her needs. Others fear her and skip over her as a patient or try and put it off on somebody else.”

Rebecca said that she has witnessed CNAs taking as long as two hours to respond to a call for assistance from patients. Nedelcove said CNAs usually respond within minutes.

Because the law prohibits a patient from being restrained, the facility cannot legally set the brakes of Anne’s wheelchair, to which she is bound by two straps.

As a result, Anne bumps into other residents in the dining room, knocks over food, and inadvertently hits people with her arms because of her chorea. To avoid these difficulties, Anne takes her meals in her room, Rebecca said.

Many of the CNAs have few or no qualifications, Rebecca continued.

Nursing homes hire “anybody off the street,” she said, adding, however, that several good facilities exist for HD people in various parts of the country.

“It’s an entry-level job,” Nedelcove admitted, noting that it’s “not a glamorous field.”

“It’s a calling rather than a profession,” she said.

However, she emphasized that all Avamere CNAs receive academic and clinical training and are state-certified.

“Most of them come to us with a great deal of experience,” she said.

A criticism of public agencies

In 2009, Anne was sent to the nursing home to recover from an operation needed after her HD symptoms had caused her to fall and injure her brain.

For a while, Anne had hospice care, as her weight had fallen to about 90 pounds. However, after her diet and weight improved, she no longer needed hospice.

Public agencies will not fund the 24-hour home care that would serve as an alternative to placing the patient in a nursing home, Rebecca explained.

“They will pay the nursing home over $6,000 a month to pay for somebody to give such little attention to my mother that she could get strangled, but they will not pay for better care at the same rate in my home,” she said.

Grossly misunderstanding HD

CNAs, Rebecca said, need better preparation in order to take “care of our elderly and the most vulnerable in society.”

Those vulnerable include thousands of HD patients, who, along with their families, face enormous difficulties in finding facilities that understand the disease and will take in someone with HD.

Rebecca recalled her family’s encounter with a past director of nursing at Avamere.

“They usually deal only in comatose patients, not the kind that can call down the hallway,” she said. The nursing director told Rebecca that “my mother needed to stop calling down the hallway, because HD is not a crutch and my mom is responsible for her own behavior.” The nursing director stated that if Anne couldn’t control her calls down the hallway, she could be evicted from the home.

“If you even say the word Huntington’s disease, nursing homes don’t want to talk with you,” Rebecca said, noting that most facilities focus on young people who are developmentally delayed or on the elderly, thus missing the middle years, the period where most HD people experience onset of symptoms.

Rebecca worked to educate the Avamere staff about HD. She arranged for the facility's previous director to participate in HDSA-sponsored caregiving webinars. He passed on information about HD to many of the staff. This “gave them some enlightenment,” Rebecca said.

However, because of recent high turnover at the home, including the removal of that previous director, few current employees have knowledge of HD, she said.

HDSA’s response and recommendations

Staffers at the HDSA national office in New York expressed deep concern about the incident and are closely monitoring the situation in Coos Bay. However, HDSA cannot comment on the specifics of the case in order not to violate patient privacy.

HDSA urges families to carefully research facilities before placing a loved one. It provides a number of publications, articles, and other materials regarding long-term care on its national website.

It also offers free in-service trainings for long-term care facilities.

As previously reported, many in the HD community have asked HDSA to provide funding for care. However, with an annual budget of only $8.5 million, the organization could not begin to provide such assistance. Families must rely on Social Security, Medicare, Medicaid, and other government programs, as well as long-term health care insurance and other private insurances.

(In a future article: how segments of the HD community have strived to provide better care for patients).

Huntington’s disease and the financial jitters

As I’ve written before, living with the deadly gene for Huntington’s disease is like a high-wire act. Fearful that HD’s terrible symptoms could start any time, I walk the tightrope while juggling job, family, HD advocacy and, along with my wife, our finances.

As I have described in a number of articles since beginning this blog in January 2005, HD is a killer of dreams. Although the threat of HD has caused me to grow in many ways and to enjoy life more fully, it has also led us to abandon many plans, including having a second child after we went through the trauma of testing our first baby in the womb. (She tested negative and today is a healthy eleven-year-old.)

If it weren’t for the specter of HD, which took my mother’s life in 2006, I could have advanced much further in my career. My wife and I could focus on saving for retirement rather than building up an “HD war chest” to compensate for the deep losses in income expected after the onset of symptoms forces me to stop working in the near future.

I’m almost 52, the age at which my mom already had symptoms.

Turning the crisis to our favor

The fear of HD has caused us to fret about our finances. We agonize over big purchases, and even bigger decisions such as refinancing our home turn into weeks- and even months-long discussions.

Our fears increased greatly in the recession that began in late 2007 and got much worse in 2008.

Like many Americans, we were reeling from the stock market crash, which eroded our savings. We were stunned at both the enormity of the crisis and the massive stimulus program, financed with borrowing from foreign sources.

But, hopeful about a recovery, we sought to turn the short-term crisis to our long-term advantage.

In 2009, during the early months of the administration of President Barack Obama, we took advantage of extremely low interest rates to refinance the mortgage, taking out extra money to build a swimming pool and carry out other home improvements. (I jokingly referred to the project as the “Obama stimulus pool.”) The risk was well worth it: the huge savings from the lower interest rate made the pool affordable, and I took up swimming again to bolster my brain against HD onset.

Economic pain

In a state with a real unemployment rate of more than 20 percent, we were thankful to have jobs.

However, we started to feel the economic pain not long after we took our first swim in the pool. For the first time in nearly two decades as a university professor, I received no raise during the 2009-2010 academic year. The next year my wife, a teacher in the San Diego school district, took a 3.7 percent pay cut that remains in effect. Like many others facing pay freezes and cuts, we’re also paying more for benefits.

To compensate for the lost pay, the school district cut five days off the school year and cut hundreds of millions of dollars from its budget. Now, with California sinking ever deeper into crisis and forcing additional school cuts of tens of millions of dollars, the San Diego district leadership may cancel even more classes. Last week, the superintendent declared that the district might need to declare itself insolvent. Teachers will likely face further salary cuts.

As we feared yet another drop in family income, my wife and I also worried about the quality of education our daughter is receiving in the public schools. We quickly became frustrated with the middle school that she entered in September. Class sizes are large (36 per class), and the school does not offer placement tests to ensure that all students have access to the proper level of instruction. It offers only a few honors sections.

Frustrated and convinced that the school crisis will last for many years, my wife and I decided that our daughter will apply to private schools.

Extending beyond our reach?

Annual tuition and other expenses at these schools could cost as much as $30,000. To afford it, we would need to forfeit all saving for retirement – the biggest portion of our HD war chest. Because we put pre-tax dollars into retirement, every dollar we stopped saving would be taxed at about a third. That would make the real cost of the most expensive private school closer to $40,000.

That was getting well beyond our reach, especially when we also need to save for our daughter’s college expenses.

Once again, we decided to refinance our mortgage in order to borrow enough money to pay for about half the cost of six years of private school (grades 7 through 12).

Because we refinanced for the pool, this time we must max out on the mortgage: we will be borrowing about 75 percent of the value of the home. We bought the house in 1999 and saw its value more than double during the real estate boom of the early to mid-2000s. Even in today’s depressed market, it’s still worth about two thirds more than the original price, thus allowing us to take out substantial cash upon refinancing.

In addition, interest rates have dropped to near historic lows. We’ll have a rate below 4 percent – a bargain when compared to forfeiting saving for retirement and the HD war chest.

Risk exposure

Nevertheless, unlike the pool project, this round of refinancing has left me with the jitters. Taking out such a big loan, with a mortgage payment of hundreds of dollars more per month, conjures up memories of how little disposable income we had after our first property purchase in 1994. That was before we learned that my mom had HD.

The future of our economy seems even more uncertain than it did in 2009.

And I worry about exposing the family to too much financial risk precisely as I progress towards the probable onset of HD.

In fact, as I write this article, it seems like sheer lunacy!

How will we pay for private school and a bigger mortgage, save for our daughter’s college and our retirement, build the HD war chest, and run the household if I must go on state long-term disability, which would pay, at most, only 65 percent of my salary (this income, at least, would be tax-free) and run out after age 65? I might be able to supplement disability with Social Security and Medicare benefits, but, as I wrote earlier this year, HD people struggle to obtain, and are sometimes even denied, those benefits.

Helping while I can

It’s a huge gamble – but one that we feel we must take.

It only makes sense when I remember that we are providing for one of the best investments in our daughter’s future: an excellent education.

Born HD-negative, she was our “miracle baby.”

But she is no longer that baby. She stands on the verge of adolescence – and is now only five years away from filling out her college applications.

She is HD-free, but could still feel the disease's impact because of the stark possibility that I could become disabled and therefore less able to support her during her high school and college years

I desperately await news of the key research breakthrough that will save me from the dementia and other devastating symptoms of HD. I want to see my daughter graduate from college and build a life of her own.

If HD prevents me from enjoying those moments, I will at least have done my part to help her get there while I could still help.

S.O.S. for Huntington's disease families, and an important bill in Congress

Huntington’s disease ravages the brains and bodies of its victims, usually leaving them utterly dependent on others. Whereas a child matures, an HD patient regresses.

As a result, HD families face enormous caregiving and financial burdens, ones that neither governmental agencies nor disease organizations yet adequately relieve. (A pending bill in Congress, as described below, could help significantly.)

From the time of my HD-stricken moster's apparent early symptoms in the late 1980s until her death in 2006, I watched her lose the ability to walk, converse, and eat.

Fortunately, my “HD warrior” father could care for her. Ten years her senior, he retired around the time that she began to need full-time care. She mainly sat at home, rode around with him in the car, ate with him at restaurants, and attended Sunday Mass. They did slow walks around the local indoor mall, first with Dad helping support her so that she wouldn’t fall, then with her using a walker, and finally with her in a wheelchair.

At home, Mom started to fall more frequently. Once she broke a wrist. Another time she hit her head on a piece of furniture, opening a gash that required five staples. In August 2005, we agreed to put her in a nursing home.

Until that point, my parents had gotten by financially on their modest retirement savings and Social Security.

They had enough money for several years of care at the nursing home, but the monthly nursing home bills of several thousand dollars began to rapidly deplete their savings. They would have to spend virtually every penny before she could qualify for Medicaid.

Her death cut short the need to seek public assistance. My father lived almost four more years, able to survive on his savings and Social Security.

Worries about the future

Now my family also faces potential financial difficulties.

In 1999, I tested positive for HD. Now, at 51, I have reached my mother’s age of disease onset. I am doing my best – via exercise, meditation, and supplements – to stave off symptoms. Still, when those symptoms inevitably start, I could lose my job, causing a dramatic drop in family income. Frugality has long been the name of the game in our home.

To prepare for the worst, in recent years we have built a Huntington’s disease “war chest” by saving between 15 and 20 percent of our income. Our daughter turns eleven next month, so we’ll also need to tap those funds for her college education.

Once I become symptomatic, we will have to apply for Social Security disability and Medicare benefits.

Inadequate nursing homes

Often I am painfully reminded of my family’s situation and the urgent need for financial and caregiving assistance for our HD families.

Recently, my fellow HD advocate Frances Saldaña of Fountain Valley, CA, unburdened herself to me about her family’s struggles.

Frances’s first husband died of HD, and her three children developed juvenile Huntington’s disease. Her youngest child, Marie, died in late 2009 at the age of 32.

Michael, 38, lives in a care facility in the infamous, crime-plagued Los Angeles neighborhood of Watts, far from Fountain Valley, which is in Orange County.

“It’s the only place that would take him,” Frances told me over the phone after we discussed advocacy for the Huntington’s Disease Parity Act of 2011, a bill in Congress that would make it easier for HD patients to obtain Social Security and Medicare benefits.

In Orange County, all of the care centers she approached refused to take in Michael because of their inability to work with HD patients.

“‘They require too much work, and we don’t have the staff,’” Frances explained, quoting the comments of care administrators about HD patients.

Frances says these facilities are violating the law by refusing to live up to the contracts they sign with the State of California, which prohibit discrimination against patients in facilities that receive Medi-Cal funds (the name for Medicaid in California).

To my knowledge, nobody in the HD community has had the time or expertise to seek redress from the state.

A family drained by HD

I met Frances’s oldest child Margie Hayes when the mother-daughter team advocated for HD stem-cell research at a meeting of the California state stem-cell agency in December 2007. Margie already had noticeable symptoms such as chorea (shaking and trembling), although she could still speak clearly. Everybody in the room was moved by their presentation.

Margie Hayes (right) speaks at California stem-cell meeting in 2007 as mother Frances Saldaña looks on (photo by Gene Veritas).

Now 41, Margie struggles with her worsening symptoms. For more than a year, Frances and other relatives have pooled resources to hire a private caregiver to watch over Margie eight hours per day. Because Margie is not her legal dependent, Frances cannot deduct her contribution on her tax returns.

“Her husband is so drained,” Frances said of Craig Hayes’ attempt to care for his wife at their home. “He doesn’t have the energy to do this anymore. He quit his job in Huntington Beach, which paid a lot more, so he could be close to Margie and the kids.”

Craig comes home at midday to give Margie her medications and feed her lunch.

“Not very many men would put up with this," Frances said. "She gets feisty and has behavioral issues when things don’t go her way."

Losing control

On one occasion, Craig had to hold Margie to prevent her from running out of the house, Frances told me.

“She’s totally disabled,” Frances continued. “She can’t talk anymore. She’s just mumbling. She can’t walk without anybody holding on to her. She has grimacing on her face. She refused a wheelchair.” The family must chop Margie’s food into small pieces so that she can safely swallow it.

In early April, Margie fell in the bathroom, slicing her skin open on a metal rail. She required 30 external and internal stitches. Yet, according to Frances, the emergency room personnel missed another laceration on the crown of Margie’s head. Only later, when the home caregiver was brushing Margie’s hair, did that cut become apparent. A crust of dried blood had formed, causing it to heal on its own. Luckily, Margie didn’t fracture her skull or have internal bleeding, Frances said.

The battle for Social Security

For years, Frances has championed the cause for improved facilities for HD patients in California, but to little avail. The family again faces the extremely difficult challenge of finding a care facility, this time for Margie.

Despite her advanced HD, Margie has not gotten Social Security disability payments. According to Frances, Craig became too overwhelmed to successfully complete the long and bureaucratic application process. Frances, too, feels overwhelmed and wishes she had more time to devote to the matter. Those funds would help defray the cost of Margie’s care.

She pointed out the need for the Huntington’s Disease Society of America (HDSA) to provide legal services for people in her situation.

After seeing three children devastated by HD, Frances is anxious about her grandchildren, who have not been tested.

“The clock is ticking,” she told me. “These kids are getting older. If they have the mutant protein, we still don’t have a treatment. The research has to move faster.

“I gave up on the care being there for my children about four or five years ago. My goal now is to make them comfortable. I hope to God that my grandchildren are not carrying it.”

Losing a home

James Valvano, a 39-year-old Florida patient with early symptoms, has received a doubly harsh dose of HD reality: he lost his business – and now his home. James has produced an important film on HD titled The Faceless Faces of Huntington’s Disease (click here to read more).

“My partner and I lost our home (of 14 years) and have moved in with my parents,” James wrote me a couple weeks ago. “Although something of this magnitude would normally ‘crush’ someone, we have decided to look at this in a positive light.

“Since my diagnosis in 2009, and the fact that I had to let my small business go, financial burdens continued to become overbearing.We will be fine, and I believe there is a reason for everything. I have to apologize for not getting back with you (let alone keeping in touch), however I became overwhelmed by life's curve-balls, and the simple fact that we were struggling to stay afloat."

James has tried to find the bright side. “The saving grace to all of this is the wonderful people within our … community, and my Film Team," he wrote. "I was not willing to let financial hardship destroy what we had worked on for two years ... nor was I going to let the anxiety and depression drown me.”

James Valvano (personal photo)

James receives Social Security disability income and, with the standard two-year waiting period about to expire, will also get Medicare benefits. (The above-mentioned HD Parity Act would eliminate that waiting period.) James’s partner was let go from his job at British Petroleum. For a number of months the couple tried to get by on just $1,000 a month.

“It came down to not having enough money to pay the mortgage, and the mortgage company would not work with us to refinance the house at its current value,” James continued. “We had a lawyer who was keeping them ‘at bay,’ but due to financial (constraints), we were unable to continue to pay him (the lawyer). So, we just decided to pick up and leave.”

Too big a hole to fill

In situations like those faced by Margie and James, HD families often have nowhere to turn.

“Why in this world is there no organization out there to financially set up or give help to HD families?” one woman lamented in an HD discussion group on Facebook.

In an interview on May 19, I put this question to Louise Vetter, the CEO of the Huntington’s Disease Society of America, based in New York City.

“The Board (of Trustees) has actually talked quite a bit about it, because it is something that I’ve heard from the day that I joined,” said Louise, now in her third year at the HDSA helm after nine years working for the American Lung Association. “Certainly the financial impact of HD is unique and particularly devastating.

“Unfortunately, it’s a hole that we just can’t fill, due to our (limited) resources and the overwhelming financial need. How would we choose that somebody’s rent is worth paying and somebody else’s isn’t? It really comes down to that. The board has struggled with this and felt that we cannot be a financial service organization at this time and still meet the other needs of our mission.”

HDSA’s annual budget is approximately $8.5 million, with roughly one quarter going for administration and fundraising and the rest for education, research, and the local Centers of Excellence for Family Services and Research.

The organization continues to rely mainly on affected families for its donations.

“There are a lot of smaller foundations that will provide support in specific communities,” Louise continued in reference to the dire needs of HD families. However, most national health non-profits do not provide such assistance.

May 31: HDSA’s call-in day to Congress

So, for now at least, HD families must depend on public assistance.

Louise pointed out that HDSA staff members can assist family members with questions about government benefits such as Social Security and Medicare. HDSA’s number is 800-345-HDSA (4372).

To help get benefits faster into families’ hands, HDSA and its many volunteer advocates in the field are making a big push to pass the HD Parity Act.

As of May 27, 2011, 67 members of the House of Representatives and four Senators had co-sponsored the Act.

In mid-May, HDSA announced the key support for the bill from Sen. Charles Schumer (D-NY), who is a member of the powerful Senate Committee on Finance and its Subcommittee on Social Security, Pensions, and Family Policy.

On Tuesday, May 31, HDSA is sponsoring a national call-in day. The organization requests that all HD families, friends, and supporters call uncommitted senators and representatives and urge them to co-sponsor the bill.

To learn more, click here. Also watch the interview on the bill that I conducted on May 19 with HDSA advocacy manager Jane Kogan.

HDSA's Jane Kogan: Time to Contact Congress on Huntington's Disease Parity Act from Gene Veritas on Vimeo.

S.O.S. HD

The call-in day is the HD community’s S.O.S. to Congress and the country. Families like the Valvanos and the Hayeses need our help. Because their burden is so huge, society needs to lend a hand.

Passage of the HD Parity Act of 2011 would provide a tremendous boost to HD families and the cause in general.

Remember: please call your representative and senators on May 31!